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No Correlation Between Lyme and CCSVI

Posted: Mon Nov 22, 2010 3:29 am

by MarkW

Linking Lyme Disease and CCSVI is likely to mislead some unfortunate people who have both MS and Lyme Disease. If you suspect Lyme get properly tested and go on antibiotics for many months to kill the bacteria (it is not simple). If after getting the all clear for Lyme you suspect you have extracranial venous stenoses (EVS) then get a selective venogram and get de-stenosed if you have EVS.
However, MS and Lyme are not correlated and must be diagnosed and treated as two diseases. I hope there are very few people with both MS and Lyme as that would be unfortunate.

I have already discouraged people with Lyme from posting in CCSVI forum on thisisms website as it could confuse pwMS seeking info on CCSVI.

An aside - there is evidence that CPn provokes or triggers MS but this is covered on a website called CPn Help dot org.

CCSVI and MS is complex enough on its own, without adding other tangents.

MarkW

Re: No Correlation Between Lyme and CCSVI

Posted: Mon Nov 22, 2010 10:26 am

by NotFound

MarkW wrote:. However, MS and Lyme are not correlated and must be diagnosed and treated as two diseases.

I disagree.

MS is not a disease per say. MS is a compilation of symptoms (scattered CNS lesions affecting various body functions).

The causes of those symptoms can be Lyme, can be CCSVI, can be mercury poisoning, we don't know for sure yet.

Can CCSVI weaken the body so it would be more susceptible to bacteria? Absolutely. Borrelia Burgdorfery did not just emerge from thin air. The bacteria was in existence way before we, the humans, were.

Our susceptibility to that bacteria however has increased.

Hence, I believe that looking at the possible connection with MS in general and CCSVI in particular should be encouraged.

Re: No Correlation Between Lyme and CCSVI

Posted: Mon Nov 22, 2010 4:58 pm

by Johnson

NotFound wrote:

MarkW wrote:. However, MS and Lyme are not correlated and must be diagnosed and treated as two diseases.

I disagree.

MS is not a disease per say. MS is a compilation of symptoms (scattered CNS lesions affecting various body functions).

The causes of those symptoms can be Lyme, can be CCSVI, can be mercury poisoning, we don't know for sure yet.

Can CCSVI weaken the body so it would be more susceptible to bacteria? Absolutely. Borrelia Burgdorfery did not just emerge from thin air. The bacteria was in existence way before we, the humans, were.

Our susceptibility to that bacteria however has increased.

Hence, I believe that looking at the possible connection with MS in general and CCSVI in particular should be encouraged.

Further to that, what of the possibility that Lyme (or one of its co-morbidities) causes CCSVI? Babesiosis has a predilection for the endothelial cells, for one. Biofilms, L-form bacteria, encysting bacteria, are all possible culprits. The problem is, what research has been done is labeled as quackery (sound familiar?), and there are billions of tourist dollars at stake for Lyme-endemic areas (which, coincidentally, have high rates of "MS"). I don't know of many couch potatoes with "MS" - they all seem to be formerly active outdoors people.

Nobody knows what causes "MS", and Lyme is largely ignored and denied. I am going after chronic bacteria as a possible cause of my own tribulations, and Lyme is my principal suspect - it has been since the beginning. I'll let you know how it goes.

Edit - being properly tested for Lyme disease is no easy feat, either. Doctors who treat for Lyme with long-term abx are also subject to having their licenses pulled (in British Columbia, at least). Further to that, the BC CDC has been proven to be under-reporting Lyme by as much as 30X. Over 600 people per year are infected in BC, while the BC CDC reports ~20. These numbers are from Doctor surveys, and only about 30% of doctors respond, so the numbers could be much higher. I can't find any statistics on how many cases of "MS" are diagnosed each year, so I am not sure of any statistical co-relation.

ccsvi and lymes

Posted: Mon Nov 22, 2010 8:59 pm

by solney

its early days to exclude anything. especially something with alot of the same symptoms. its not a far off connection . a tick gives a patient lyme which attacks the vein walls and causes ccsvi, soon developing ms like symptoms. be assured that the lyme society is watching this ccsvi story develop on the edge of there seats. join the debate i say!

lyme

Posted: Mon Nov 22, 2010 9:09 pm

by solney

testing for lyme in canada is much to be desired. we are sending my mothers tests to california. lets hope it gets over the border before its useless. i cant believe that we cant get properly tested in our own country. seems like lymes and ccsvi have more in common than we think. they both are trying to get out of the closet!

Posted: Wed Aug 03, 2011 1:46 pm

by AlmostClever

I haven't gone through the rest of the CCSVI-Lyme links that popped up when I searched but I started to think about this:

Alot of diseases like Lyme are caused by bacteria that are oxygen intolerant or low-oxygen tolerant.

What if increasing blood flow not only provided more oxygen to oxygen-deprived cells in the brain and spine but at the same time killed off these bacterial infections?

Might explain why some improvement take an extended period of time like 6+months.

Just a thought...

Posted: Wed Aug 03, 2011 2:29 pm

by Cece

Alot of diseases like Lyme are caused by bacteria that are oxygen intolerant or low-oxygen tolerant.

Many viruses also do better at cooler temperatures, which means that people with dysfunctioning autonomic systems and a resultant lower body temp could be more virus prone.

As a group, do we want to discourage people with Lyme disease from posting in this forum? I was surprised by that idea. We have been discussing CCSVI here, not exclusively CCSVI in MS.

I wonder what questions our friends with Lyme disease might have for Dr. Sclafani!

I also would love to see research on Lyme disease. Only a very small percentage of people who get Lyme disease get the chronic neurological version. Perhaps most people who are infected and respond to treatment or heal on their own do not have CCSVI and subgroup that has CCSVI has a weakened blood brain barrier and that contributes to the bacteria getting its foothold and becoming chronic neurological Lyme.

People had also noticed a pattern of some people getting the flu shortly after the procedure. I always thought, sure, that's from travelling, but then LymeNurse posted, and now I think, it's a possibility that it was Herxheimer mistaken for the flu. You can also get Herxheimer from die-offs other than Lyme, right?

Does anyone know if there is a forum on the internet discussing Lyme disease and CCSVI?

We could always create a subforum here too.

Posted: Wed Aug 03, 2011 5:59 pm

by fee001

Hi!

I havent watched video. And this is just my opinion, as I have done a little research on lyme, never at any time have I encountered a mention of a link to blood flow.

I am very wary when suddenly something comes up out of the blue, that causes further confusion. With no conclusive proof. being misdiagnosed with MS instead of lymes is a strong possibility,

Fiona

Posted: Wed Aug 03, 2011 6:44 pm

by fee001

Hi!

If this was known back in 2010,
Perhaps somebody could give me an official site, not a blog etc. but where official research has been done on the lyme link.

Fiona

Posted: Thu Aug 04, 2011 8:17 am

by AlmostClever

One moderator reported this on a Lyme forum I've been watching:

"Here's another tid bit to think on. I had a SPECT scan done and it came back with two areas of my brain having less blood flow than normal. I did a whole bunch of reading in order to find out that Lyme -once it reaches the brain- can and does reduce the amount of blood flow to areas that correspond to the symptoms that you are currently experiencing."

Little bits and pieces to the puzzle...

Posted: Thu Aug 04, 2011 8:24 am

by AlmostClever

fee001 wrote:Hi!

If this was known back in 2010, Perhaps somebody could give me an official site, not a blog etc. but where official research has been done on the lyme link.

I just had a new PCR lyme test done by the mayo clinic and although it is not FDA approved yet my gp thought it would be more acurate than the other tests out there. I have pulled out many a tick from all over my body, torn some and taken some out of my head so I could not check for the "circle", I always suspected I had some tick borne disease as well, but my lyme tests have always come out negative and with respect to the other million tickborne diseases my doctors have never been interested.

I had no improvements after ccsvi.

Posted: Fri Aug 05, 2011 6:38 am

by Danz

Greetings all, I am new to the forum. I do not have ms. I am a 49 year old man with diagnosed lyme. I have a wife and two daughters with lyme. My oldest daughter and wife do pretty well. My youngest (age15) and I are pretty bad. My youngest and I are going to be evaluated for ccsvi in Las Vegas next week.

I will post more as I am able, but I would like make a couple of points. First, when my lyme doc said we might have ccsvi, I looked high and low online to find as many lyme patients as possible that have been tested. I found about 12 direct and indirect reports of lyme patients being tested. The positive rate was 100%. I did not find a single case of a negative test. Not scientific, of course, but definitely food for thought.

I did consider testing in Atlanta. CCSVI Atlanta has the following statement on their website:

"Chronic Cerebrospinal Venous Insufficiency (CCSVI)
appears to be affecting millions of
people with neurological problems worldwide
Vascular circulatory problems may be related to many neurological conditions:

Multiple Sclerosis

Chronic Lyme Disease

Parkinson’s Disease

Autism

Amyotrophic Lateral Sclerosis (ALS)

AV Malformations

The discovery of CCSVI unveils the blood blockage theory that vascular
abnormalities may be a common factor in many neurological conditions"

When I started reading the ms forum I was really struck by the similarities to chronic lyme. My predominate symptoms are debilitating fatigue, brain fog, extreme malaise. Other than the brain fog my neurological symptoms are relative minor. Still, I think these symptoms will look very familiar to the ms community.

My last point concerns the issue of whether lyme patients should post here or whether that will confuse things. I saw a post somewhere else by the ubiquitous CeCe expressing concerns about symptoms her children were exhibiting. It could be that the origins for ccsvi is infection. Maybe lyme, maybe something else. This is what my alternative lyme doc believes. This raises the possibility that ms patients that have family members with symptoms might want to consider an infectious cause. If it can be addressed then bigger problems could be averted. Theoretical, I know, but maybe worth considering.